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As ER waits stretch for days, Mass. turns to in-home care for children's mental health

It was around 2 a.m. on Oct. 24 when a mom named Carmen realized her 12-year-old daughter was in danger and needed help. Haley wasn’t in her room — or anywhere in the house. Carmen used an app on her phone to locate Haley. She was moving along a main street in their central Massachusetts community. Carmen’s mind raced to scary possibilities.

“She don’t know the danger that she was taking out there,” said Carmen, her voice choked with tears. “Walking in the middle of the night, anything can happen. I wanted to see her again.”

Carmen picked up Haley, unharmed. But in those early morning hours, Carmen learned about more potentially dangerous behavior — provocative photos the 12-year-old sent and plans to meet up with an older boy. Carmen also remembered the time a few years back when Haley was bullied and told Carmen she wanted to die, which is why WBUR is only identifying Haley and her mom by their first names.

Worried her daughter might harm herself, Carmen drove Haley to a Umass Memorial emergency room, the only place she knew to look for help in the middle of the night.

“That’s why we went to the hospital because also she had thought to kill herself. It was a lot,” said Carmen.

Haley ended up on a gurney, in a hallway, with other young people. Carmen had to go home at times to care for Haley’s siblings.

“Leaving [her] in there for days, seeing all those kids, it was terrifying for me,” Carmen said.

Carmen talks to a counselor, in her home, about the night Carmen realized her daughter Haley was sneaking out, engaged in dangerous behavior. (Jesse Costa/WBUR)

And for Haley, too.

“I didn’t know if they were just going to send me home or put me in a really weird place,” she said. “It was, like, really nerve-wracking.”

That week, Haley was one of 115 children and teenagers who came to a hospital emergency room in a mental health crisis and got stuck there. Many waited days or weeks for an opening in an adolescent psychiatric unit. The problem, known as boarding, has been on the rise for more than a decade. Some hospitals reported record high numbers during the pandemic.

To speed up transfers to mental health care and reduce the strain on ERs, Massachusetts is trying something new. The state has contracted with four agencies to provide intensive counseling at home as an alternative to psychiatric hospitalization. The approach is called emergency department diversion.

To figure out what’s best for each child, the hospital starts with a psychological evaluation. Haley had one on her second day in the UMass ER. DeAnna Pedro, the liaison between pediatrics and psychiatry at UMass, reviewed Haley’s report and considered recommending time in a psychiatric unit.

“She was doing a lot of high risk things,” Pedro said. “So there was a lot of thought given to, would we need to go to something extreme like a psychiatric admission, to keep her in place.”

But both Pedro and Haley’s parents worried about this option. It would be a dramatic change for a 12-year-old whose only experience with mental health care was her school counselor.

“Put her on an inpatient psych unit with potentially kids who’ve been experiencing a lot of other things,” Pedro said, then paused. “Parents were concerned, appropriately so.”

So Pedro contacted Youth Villages, one of the youth diversion agencies  Massachusetts hired during the pandemic. The state pays the cost: $8,522, on average, for the typical course of care. At Youth Villages, that’s three 45-60 minute counseling sessions a week for three months.

The savings is significant. One study calculated the cost of pediatric boarding at $219 dollars an hour, or $5,256 for just one day. And that doesn’t include expenses tied to care in a psychiatric unit.

Haley’s family met a Youth Villages supervisor in the UMass ER. The first home visit the next day included a safety sweep.

“We look under rugs, we look behind picture frames, we look in the dirt of plants,” said Laura Polizoti, the counselor assigned to Haley’s case. “We’ve had kids hide stuff in the dirt of a plant.”

Haley had to give up her phone. So the sweep included making sure she didn’t have an old one tucked away. Youth Villages provided window and door alarms that Haley’s parents could activate at night. The program also offers lock boxes, if needed, for medications or sharp objects a family wants to keep out of reach. Counseling for Haley and her parents started right away.

A key goal was to understand why Haley was sneaking out at night and taking sexually inappropriate pictures. During a counseling session one afternoon in December, Polizoti focused on Haley’s anger at herself and her mom.

“Have you ever done an emotional thermometer before?” Polizoti asked, laying an oversized picture on the table in a private room at the local library. The picture had blank lines for five emotions, from cool to hot.

“It can help you see where your feelings are at,” Polizoti explained. “Then we’ll come up with coping skills for each level.”

In the blank next to the bottom of the thermometer, Haley wrote, “chill.” At the top — in the red zone — she wrote, “infuriated.”

“Infuriated, that’s a good word,” Polizoti said. “So when you’re infuriated, how do you think you feel physically, what do you notice?”

Haley told Polizoti that her palms get sweaty, she stops talking and she makes “a weird face.” Haley scrunched up her nose and frowned to demonstrate. Polizoti laughed.

As the exercise unfolded, Polizoti asked Haley to think of ways to calm herself before irritation turns to anger. Haley suggested spending time alone, watching TV, playing with her brothers or jumping on the family’s trampoline.

‘That’s a good one, the trampoline,” said Polizoti. “Can we come up with one more?”

“I could, like, talk with my mom,” Haley said, her voice rising as if she were asking a question.

“Awesome,” said Polizoti.

Haley often hits the red zone during a fight with her mom. It might start because Haley left out dirty dishes or didn’t clean up her room. From Haley’s point of view, her mom is too impatient.

“Sometimes I wish my mom would just ask me [to do chores] instead of yelling at me,” Haley said.

Two of the worksheets used to by Youth Villages when working with patients (Images courtesy Youth Villages) Two of the worksheets used by Youth Villages counselors when working with patients. (Images courtesy Youth Villages)

Polizoti pulled out another chart to help Haley see the relationship between thoughts, feelings and behavior, what’s known in therapy as the cognitive triangle. Understanding these links could help Haley react differently when she and her mom fight.

Haley gets mad when her mom yells. She told Polizoti that makes her more disrespectful.

“And the behavior is that you sneak out?” Polizoti asked. Haley nodded, yes.

Polizoti leads sessions with Haley and Carmen together too, often around the kitchen table or in the living room. Polizoti suggested a technique called collaborative problem solving to resolve the cleaning disputes. The first step is showing empathy. That’s a hard one for Carmen. She likes a clean house. And Carmen didn’t have the problem of too many clothes or toys when she was Haley’s age.

“I’m trying to give my kids better,” said Carmen, the emotion rising in her voice. “I didn’t grow up in a house like this.”

Haley suggested another dresser for her room. Carmen proposed giving away clothes Haley doesn’t wear as much. As the hour ended, it was clear cleaning will be a topic for future sessions. But overall, Carmen said the counseling is helping Haley. She has started vaping, but hasn’t left the house at night.

“She’s been good, honestly, since you guys have been in here,” Carmen said to Polizoti.

The emergency department youth diversion program has grown quickly from a pilot in March 2021 to the 37 hospitals that participate today. The state Department of Mental Health says as of early December, 470 youth, ages 4 to 18, had worked with one of the four agencies. A vast majority, 83%, have not returned to an emergency room with a mental health concern. In all, 91% of youth have met their treatment goals or were referred for additional treatment services.

Advocates for parents of children with mental health issues say the main complaint they hear is that hospitals don’t present the at-home care programs quickly enough and that when they do, there’s often a wait.

“We would love to have more opportunities to get these diversions with more families,” said Meri Viano, associate director at the Parent Professional Advocacy League. “We’ve seen in the data and heard from families that this has been a great program to get children in that next place to heal faster.”

There are families who hesitate to try diversion if their child takes — or may need to start taking — psychiatric medications. Youth Villages does not have prescribers on staff.  Children who need meds see a psychiatrist or primary care doctor outside the program.

Diversion programs seem to offer some relief for overburdened hospitals and staff. A report from the Massachusetts Health and Hospital Associations shows youth boarding numbers dropped as more hospitals started referring families to one of the home-based options. Demand for mental health care does vary by season, but the MHA says the numbers are hopeful.

“I would think it would be worse without these programs,” said Leigh Simons Youmans, MHA’s senior director of health care policy. “They help hospitals manage capacity” and help children get out of chaotic emergency rooms.

It’s not clear what percentage of children and teens who go to a hospital emergency room for mental health care can be treated at home rather than in a psychiatric unit. Home is not always a safe place for a patient. But Matthew Stone, Youth Villages director in Massachusetts and New Hampshire, says in other cases home-based care can be the best option.

“Many of the mental health challenges that these children are facing are driven by factors in their natural environment: their school, their neighborhood, their peer system,” said Stone. “It’s our view that you really can’t work on addressing those factors with a child in a placement.”

Clinicians in psychiatric units do work on family and social issues, sometimes bringing family members into the hospital for sessions. There’s no data yet to compare the outcomes.

Massachusetts is unusual in using diversion as a way to relieve mental health boarding for children and teens. There’s some disagreement about whether diversion is a short or long term solution.

“It has been effective,” said former Health and Human Services Secretary Marylou Sudders, who is now consulting for the Healey administration. But Sudders calls diversion “a stopgap in response to the immediacy of what emergency departments are experiencing.”

Sudders argues that the need for diversion will subside as the state launches a multi-year plan to improve mental health care. The Roadmap for Behavioral Health Reform includes a new state-wide help line, more community mental health centers and more urgent mental health alternatives. Advocates are watching to see if these services help patients treat mental health problems early, before they escalate to the need for an emergency room visit.

But for the time being, Carmen and other parents coping with their first mental health crisis will likely still head for a hospital ER. Carmen hopes they do. She doesn’t like having people “in her business,” but this experience Carmen said she wants to share.

“A lot of parents don’t know what the kids are going through because they don’t want to accept that your kids really need help,” she said. “So that’s why I’m doing this, bringing you to my house. Hopefully this can help another family.”

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